About me

PROFILE:

I have been writing poetry and stories since I was a child, and a love of reading was instilled in me from an early age. I am passionate about writing, and hope you enjoy the books I have written. Whilst most of you sleep soundly in your beds, like many Parkinson’s patients, insomnia dictates, so during those hours that sleep eludes me, the house is tranquil and quiet, an atmosphere perfect to immerse myself in writing. My life has been a series of strange events, which have without doubt contributed to my creativity. To publish anything is to bear one’s soul to the world. It is to stand naked and let everyone see who you really are. I have poured my heart and soul out on paper and I hope to share this journey, immersing you in a story, capturing your attention and firing the imagination. Through my writing and public speaking I hope to bring greater awareness to the general public about living with chronic disease.

Wednesday, October 31, 2012

Having Parkinson’s is somewhat like belonging to a secret society. One
member of this secret society can always spot another, without a single word
being uttered. Is it the special “handshake” that we have? Or is it the famous
shuffle and hunched over pose? The trouble is, this “society” that millions
around the world belong to (unwillingly I might hasten to add) have a hard job keeping
it secret, and if the truth be known, it shouldn't be a secret at all. Once
diagnosis has been made, the quicker one tells family and friends the better.
When those around you understand what’s going on, life becomes a little less
fraught. The clerk in the post office; staff at the supermarket, the man in the
News Agent, everyone in the bank – the pharmacy, the Municipality; you name it,
they all know I have Parkinson’s. Being an author, writing a daily blog, public
speaking, interviewed on radio and an amount of media exposure, all of which is
about two diseases; I'm doing all I can in a poor state of health to keep up the
momentum. I believe if you have something of importance to say, it’s no good
sitting quietly in the corner doing nothing. I want to get my message out there
loud and clear, keeping Gaucher and Parkinson’s in the forefront. The more
noise we all make, the greater incentive there will be for scientists and
doctors to find a cure. So if you are keeping your “handshake” secret, don’t be
ashamed; you are not alone, speak out and do something.

Tuesday, October 30, 2012

I received a number of e-mails and messages, commending me on writing so
honestly and being open about medical issues some of which are quite personal.
I believe that the Internet has given us all a remarkable chance to connect with
others across the world, who have experienced, or are in the midst of similar
circumstances. The internet is providing a means to a global support group and
it is comforting to be in contact with those who can relate to what you are
going through, the struggles we sometimes have to battle in life, whether they are
health or other issues. To be in contact with people that may live half way across
the world, who we would never have had the opportunity or pleasure to meet,
suddenly appear in our lives; all be it through our computer screens. Modern
technology has thrown this generation into a different world, and there are
many pros and cons. But support for those in need, is definitely without doubt,
now available, without ever having to leave the house. This is why I write with
such stark honesty; I don’t sugar coat anything and by truthfully revealing my
thoughts and experiences, I hope to make a difference. Everyone has a story to
tell, and no one gets through life without a few hiccups along the way. We all
make mistakes and hopefully learn from our errors, but this is what makes us
human. I was reminded by the author Jill Sadowsky, a brave and marvellous lady,
who I am honoured to call a friend, that laughter is the best medicine. I wish
you all a good day and hope that you find something to laugh about today - for
a good dose of laughter is by far the best remedy.

Monday, October 29, 2012

Having been born with a chronic disease, I have always taken care of my
body, and not wanting to sound like a goody two shoes or a prude, I have never
smoked a cigarette in my life, I wasn't a curious youth so never took drugs, I didn't enjoy alcohol and it was of no interest to me. My diet when growing up
was entirely wholesome home cooked food, some of which was grown in our own
garden, and spending much of my youth outside in the fresh air, sailing in
particular, I don’t think I could have had a healthier upbringing. Yet struck
down at the age of 44 with an aggressive form of Young On-set Parkinson’s,
clearly no amount of “clean living” can prevent certain diseases emerging.
Whether a disease is inherent in one’s DNA or from our modern day toxic environment
– it’s still not clear. It serves no purpose thinking “if only” or “why me”,
and coming to terms with something as life changing as Parkinson’s, is to my
mind, the only way forward. I continue to fight this rotten disease and refuse
to give in, but at the same time accept its part of my life whether I like it
or not. I have to adjust my lifestyle to the ever changing conditions as this
degenerative disease runs its course. As if driving a car with no brakes, I cannot
stop Parkinson’s, but I can grab tightly the steering wheel and maintain to
some degree control of my journey.

Sunday, October 28, 2012

Facilities over the years have improved vastly for the handicapped, but
there is still room for much improvement. It’s not just facilities that need to
be improved, but better understanding of disabled persons. I think the
Paralymics was a perfect example of how despite being wheelchair bound, a
person can still be highly intelligent, motivated, have determination and
strength of character. Just because someone is in a wheelchair, does not mean
their mental capabilities are less than anyone else. The all too often stereotypical
assumption that physical disability is automatically put in the same category
as mentally challenged persons needs to be addressed. I met a handsome young
man a couple of years ago, who was about to start university and wanted to
study law. He was sharp as a whip and had an engaging sense of humour and
personality. Sadly this young man had been in a serious car accident and lost
the use of both his legs, yet here he was about to set forth undeterred by his
disabilities, to achieve his dream of becoming a lawyer. When people see a
Parkinson’s patient, what do they see? Making a hasty assumption before even
talking to someone with Parkinson’s, often the shaking and tremors, along with
a masked expression and difficulty in talking can give the false impression
that someone with Parkinson’s is not entirely ‘there’, is ‘out to lunch’, 'not
the sharpest tool in the shed’ ……I think you get the idea! The symptoms of
Parkinson’s can be unnerving to observe and I realise make some people
uncomfortable, but inside this shaking, masked exterior is a vibrant person
trapped inside a body that simply isn't functioning the way it should. Ignorance
and lack of education are to blame and we need to ensure that future generations
have a better understanding of disability. I sincerely hope that through my writing
and public speaking, I can help in some way to remove the unsavoury stigma that still exists,
but I am only one small voice, so join me in doing whatever you can. For I can
promise you one thing, if you do nothing at all, then nothing will happen. Change
can’t happen overnight, it moves slowly, one step at a time, but together we
can make a difference.

Friday, October 26, 2012

When I was growing up, there was a
children’s programme on BBC television called ‘Tell me a Story’ where Ian Carmichael,
would read a story surrounded by a few young children sitting cross legged on
the floor, listening attentively as he would bring to life the characters in his
comical and engaging manner. This was my first début on British television, as
I sat wide eyed and entranced; my face was the opening shot of an episode as
this programme aired in the late 1960’s. Visiting my niece and nephew recently,
reminding me of when they were little, how I would tell them stories; off the
cuff, making up the plot and characters as I went along, and here I find all
these years’ later, writing stories that are being read around the world. My
first fiction ‘Slipping Through Time’ has been well received and I am in the
midst of writing another. I have always loved books and writing poetry and
stories, and now in poor health, I find writing both therapeutic and in a way lifesaving.
We all need purpose and structure to our days, and my love of writing keeps me
focused and busy. If you would like to take a look at ‘Slipping Through Time’
you can read the first chapter for free on Amazon. Although I originally wrote
this book for children, I am surprised at the number of adults that are reading
it, but this often is the case, as so clearly illustrated with the wonderful
Harry Potter stories, which appeal to both children and adults alike.

Thursday, October 25, 2012

This summer, London was taken over by the
excitement of hosting the Olympic Games, transforming a city, and in fact the whole
country with excitement and a contagious enthusiasm bringing countries from around the world
together in a united exciting event. In particular, the Paralympics were an
inspiration to every generation. These athletes are a shining example of how the
human spirit can overcome severe disability and drive forward to pursue dreams
and reach goals some of us would not dare to attempt. The accomplishment of
those sportsmen and women who took part was without doubt remarkable, and one couldn't help but be moved, and cheer each person on, no matter which country
they were representing. The courage, strength and skill along with great
determination lead them to participate in these games. Congratulations to those
who went home clutching a coveted gold, silver or bronze medal; but in my mind
every single athlete that took part, was a winner! So if you got out
of bed the wrong side this morning, and are moaning or feel hard done by, just
take a look at the Paralympics site which may put things into perspective.

Wednesday, October 24, 2012

Having the misfortune of being born with a
rare chronic disease (Gaucher) and diagnosed with Young Onset Parkinson’s at
age 44, I am never short of what to do. Being chronically ill is a full time
job! Kept constantly busy with doctor’s appointments, prescriptions to be
filled, physiotherapy, and all the challenges that are thrown my way, just
making it through each day and night is an accomplishment in itself! Yesterday
I spent the day in hospital for my regular six monthly check-up for Gaucher,
and as I have often mentioned, this outstanding hospital with marvellous staff
are well deserved of the high reputation they hold. I am indeed fortunate to be
under such care, and never take this privilege for granted. At the Gaucher
Clinic they have a Multi-disciplinary team, who work together providing the
very best of care for the patients, and hold a weekly meeting to discuss particular cases or bring staff up to date with new information. Yesterday was a long day for me; a battery of tests which I undergo enabling the doctors to keep a close eye on my condition. On the way home, I naturally fell asleep in the car, and want to tell you of a little tip someone suggested. The last time we flew, a thoughtful airline stewardess, seeing my discomfort, gave me a small blow up pillow that fits snugly around the neck. When sitting in a chair, or in a car, using this pillow enables one to fall asleep, keeping the head in place, instead of flopping to one side and later painfully waking up with an aching neck. If you have one of these little pillows - they are great for car journeys, or if you take a power nap in an arm chair at home.

Tuesday, October 23, 2012

Sometimes having one’s good health torn away, is
like a huge wake up call. I hear so many people complain about getting older.
It occurs to me that if one is blessed with good health and longevity, it is
not a "right" to grow old but a "privilege". The thought of
growing old doesn't scare me at all, as I greet silver grey hair, laugh lines;
hopefully tempered with wisdom and experience gained over the years. I
welcome each passing year as a blessing with open arms. No one wants to spend
their "golden years" in poor health, but with today's advancements in
medicine, there is no reason to waste unfounded worry for fear of something
that may not happen as one gets older. I would be privileged to reach a
ripe old age, hopefully with my marbles intact. At a local retirement home, there
are many residents in their senior years, some well into
their nineties who still enjoy a good quality of life, activities and
a busy social life. It's wonderful to see these vibrant and valuable examples
in our community of what growing old can be if in good health with a sound
mind. So don't stand in the shadows or on the side lines, get
in there and enjoy your life; let your hair down, be all you can, and with
courage of conviction do what you were intended to, follow your destiny. Grasp
life with both hands and make the most of this ride!

Monday, October 22, 2012

The comfort or lack of, our regular bed at home leaves much to be desired, despite being an extremely high quality orthopaedic mattress. As the Parkinson's progresses, and with the additional problems of Gaucher, my sleep is far from restful or comfortable, and moving positions in bed or getting up unaided is becoming increasingly difficult. Having flown recently for a family wedding and speaking engagement - experiencing the comfort of the electric adjustable seats in business class, made me start to think what we could do to improve my quality and comfort of sleeping at home in our own bed. This prompted in-depth research into electronic/adjustable beds. The price range and different variations on offer are vast, from the extremely expensive with a wide array of possible positions - to the simple version and less expensive, but equally effective. Although each mattress of a double bed has to naturally be separate enabling each person to individually adjust their side of the bed to a suitable position, the two mattresses are in fact held together within a frame ensuring that the bed functions as a double bed, especially for those who still like to snuggle up or spoon! There are many companies making such beds, and searching on the Internet, you're sure to find a company in your area. Although this is an expensive purchase, I believe it is money well spent.

Sunday, October 21, 2012

Experiencing a bit of “cabin fever” my daughter decided to get me out of
the house. Living in a rural area, just five minutes’ drive away is a small
goat farm where a family run cottage industry produces a delicious array of cheeses
and yoghurt. Driving down a narrow dirt track, a grand display of brightly
coloured bougainvillea spilled from each side cascading
down to the ground like a waterfall of blossoms. We arrived at a clearing
surrounded by trees, and to one side was a shaded fenced enclosure for the
goats of varying colours that were busy grazing. There were several young goats
endearingly snuggled next to their mothers, and apparently a rather strong
smell was emitting from this direction. Thanks to Parkinson’s I couldn't smell
a thing, so I continued to watch the goats unhindered by the scent, whilst my
daughter hurried off to the little shop which was air conditioned and odour free.
We tasted several of the cheeses, and again my nose failing me, I found it hard
to tell the difference between the various cheeses. A strange scenario; outside
I had benefited, not being able to smell the goats, yet inside the shop tasting
the cheeses I was at a clear disadvantage, without my sense of smell, my taste
buds were noticeably affected, and I couldn't appreciate the subtle differences
between the cheeses we tasted. I guess this just goes to prove that every situation
has its pros and cons. I presume you can guess what we’re having for supper tonight!

Friday, October 19, 2012

An experienced doctor of the highest calibre despite spending years specializing
in a particular field; can he really visualize and understand what it’s like to
live with a degenerative disease 24/7? Unless standing in a patient’s shoes, it
is impossible to grasp completely the daily complexities encountered with
chronic disease. Parkinson’s, like many neurological diseases, continually persists,
never gives up, there is no “time out” or parole for good behaviour. I've long
forgotten what it's like to feel no pain, to move my body freely, walk
briskly or dare to run. How I miss those simple pleasures I took for granted when
young in my care free days. I mourn the parts of me I've lost, my abilities and
activities I can no longer do, and things I will never see. Left with no
choice, I embrace the “new me” as this is all I can do. I'm someone slightly
different – a re-vamped Elaine, still fundamentally “me” yet changed in so many
ways. As strange as it may sound, some things have changed for the good. I no
longer worry what people will think of me, or that I need to put on the graces.
I have been given the opportunity of being “free” to speak out, to connect with
others I may have never had the pleasure to meet, to be part of something so much
bigger than myself, part of the global Parkinson’s family, all fighting for the
same cause. Each of us can make a difference, together in numbers we have
strength and the power to bring about change.

Thursday, October 18, 2012

In our 'throwaway society' which I find most disturbing and goes against
the grain; I rebel and try to be as ‘green’ as possible, but it’s an uphill
struggle. My mobile phone decided to give up the ghost and much to my regret I had
to get a new one. I bought the same model I had before as it’s the most basic simple
phone one could find, and importantly, the buttons are easy for me to use, with
a large ridge around the phone, it flips open effortlessly despite poor
dexterity in my fingers. What happened to electrical items that would continue
to work for years, and if they did eventually break, one didn't think twice
about having them fixed? There were always little work-shops where televisions,
radios and such could be mended. Today I find it hard to accept that when a
printer or microwave stops working, it is less expensive and ultimately quicker
to simply throw the old item away and replace it with a new one. I don’t think this non-green logic can be justified, yet one might say I am guilty of being hypocritical
to a degree, for when it comes to sterile medical equipment, I am more than
happy that the items are disposable. The standards of hygiene can be kept first-rate
due to throw away needles, and a whole array of small medical equipment used
daily around the world. So while it pains me to throw away my old phone because
no one will fix it, I am happy to know that every time I receive my I.V. enzyme
replacement therapy for Gaucher disease, all the equipment is new and for one
time use only.

Wednesday, October 17, 2012

I was invited by a Member of Parliament to a private tour of the
House of Commons so yesterday we made our way into the centre of London and had
a marvellous interesting day seeing how Great Britain with its long history of tradition
keeps the system running with true British pomp and ceremony. The magnificent architecture of the building where the British Government sit, is quite beautiful; glorious stained glass windows, amazing grand stone carvings everywhere you look, decorated ceilings, statues, historic portraits and in particular the Royal Robing Room were richly adorned. The Queen opens Parliament once a year, and her throne where she sits to perform this duty, is intricately decorated in gold leaf and was incredibly opulent. The impressive building has been made disabled
friendly, and we had no problem with my wheelchair, as there were ramps and
lifts enabling easy access. I was very impressed at the thought that had gone
into accommodating the needs of disabled persons, and if you are visiting London
and want to take a guided tour, take a look at this link. The Westminster Hall dates back to 1090, and is the oldest original part of the Houses of Parliament. It was a very interesting morning, seeing a side of Britain that I have never seen before. We sat for a few minutes in the Gallery watching the proceedings after which we had a lovely lunch. I would like to say "thank you" to the Member of Parliament for a wonderful day.

Tuesday, October 16, 2012

I am not in the habit of advertising or mentioning brand names on my blog,
but coming across a product recently that astonished me, I feel compelled to
share it with my female readers. Sorry to any men reading today’s blog as this probably isn't of much interest to you. However, I more than likely have now spiked your
interest to know what product I am about to divulge. I've often found that in
company, if I speak particularly quietly or whisper to another woman about
something in confidence; suddenly the men pay attention, so I guess I've caught
your interest now! Millions of dollars every year are spent on anti-ageing or
anti-wrinkle creams, and I was given a present recently of a balm that literally
tightens those lines and winkles that give our age away. I'm 49, and naturally have
a few lines on my face. Applying a tiny drop of this “magic” cream before putting
on any make-up to the areas of my face in need of some help, I looked at
myself in the mirror and was astounded to see before my eyes the wrinkles
decrease in prominence, giving my face a much smoother slightly younger appearance. I'm not saying it would work on someone in their golden years with very deep lines, but
for my age group – it works astoundingly well. So you may well now be asking –
what’s the name of this wonder product; it is Clarins Beauty Flash Balm. It’s
not cheap, but it's worth every penny as it most definitely works!

Monday, October 15, 2012

Choosing new bathroom fittings especially with disability in mind can be
a bit daunting. Wanting to make the right decision, knowing how important to
get these things right, my husband and I had spent quite some time in a shop
looking at various bathroom washbasins. Originally wanting one with a marble counter
and cupboard beneath, this clearly was not going to work, as thinking of the future,
if and when the time comes that I am completely wheelchair bound, it would be
nice to at least be able to sit comfortably at the washbasin giving me the
opportunity to do as much for myself as I can. It was clear that the washbasin
had to be the old fashioned type that is affixed to the wall, and has no
cupboard underneath. The salesman brought out several catalogues, and much to
our amazement and delight, there were a few washbasins that had a disabled sign
by the side of the page, indicating that these were suitable for my needs. What
was very interesting, and something we had not seen before, was that the normal
U-bend and piping that is fitted under a washbasin, had been modified making it much smaller, neater and takes up far less room, enabling someone in a
wheelchair to get right up close without any plumbing paraphernalia in the way.
It’s nice to see that slowly changes are being made in every sector of daily
life. Not just ramps and lifts in places where once there were none, but a manufacture
of bathroom fittings who had taken into consideration the needs of those in
wheelchairs.

Sunday, October 14, 2012

I needed to buy a birthday gift for a friend, and a shop conveniently
located nearby has a large range of presents to suite any taste at varying price
ranges. The door of the shop has an enormous heavy metal frame with large thick
glass panels, making it weigh a ton. Shuffling as I do in my ungainly Parkinson’s
“walk” with a crutch to keep my balance; I was not going to be defeated by a
door. I tapped on the glass pane and caught the attention of a saleslady
inside, who quickly came to my assistance and opened the door for me. She
smiled politely and I began to search for a suitable gift. There were many cut
glass vases and delicate breakable items on display, all pretty and eye
catching. I picked up a small glass dish and as I placed it back down, I heard an
audible sigh from the saleslady I had been unaware of, but was standing right
behind me. She asked me if I was looking for anything in particular and maybe
she could help. I suddenly noticed that she had been observing my unsteady
walking, the shaking of my hands, and that I looked like an accident waiting to
happen! Seeing her anxious expression and realising she indeed had a valid
point, I told her what I was looking for and she led me over to the counter
where there was a comfortable seat. Once I was seated and safely away from all the
breakables, she brought over several items to show me, one of which was
perfect, exactly what I was looking for. Pleased she had a satisfied customer,
she gift wrapped the present beautifully, I paid and she opened the door for me
to leave. My mission accomplished, this perceptive sales lady had been most helpful
in a tactful and considerate way without offending my feelings.

Saturday, October 13, 2012

Visiting a branch of the clothing store "Primark" in Ealing/London, I was astonished to find they had a changing room designed by someone professional, understanding the special needs of a disabled shopper. Not only was the cubicle spacious enough to enter in one's wheelchair, but there was plenty of room for two other people, a permanent secured seat at the same height as a standard wheelchair with bars conveniently positioned on the walls. Large full length mirrors placed on two walls enabling easy viewing; hooks on the walls and the most helpful staff. Other stores could learn much from a visit to this store to see what should be common place in all department stores. Understandably smaller independent shops may not have the necessary area to designate such a large space for disabled persons, but large stores have no excuse. Shopping for clothes when disabled is exhausting and very difficult, so any help, such as thoughtfully designed changing rooms is something very much appreciated.

Friday, October 12, 2012

When I think of delicious honey on hot buttered toast, it summons up a
picture of “home” – comfort food, something familiar and safe. It was A.A.Milne, who wrote the children’s book “Winnie the Pooh” which has remained a
firm favourite of the general public over the years and translated into many
languages around the world. Winnie, was a Canadian black bear who really
existed and she was originally shipped from Canada to England in 1914, ending up
living in London Zoo where A.A. Milne would take his son Christopher to visit
the animals. Yes the original Winnie was in fact a female bear! Today there remains a statue of this famous little bear. I always
maintain that one should make the most of each moment and enjoy life to the
full. I think that A.A. Milne must have had a similar philosophy for his
well-loved character appears to make the most out of any sticky situation he
finds himself in. This simply delightful character sees each day as a new
adventure, a fresh start, and every day is his favourite day! What more
positive or cheerful a character could you find? I think it is evidently clear
that A.A. Milne must have had the “happy gene” in order to create the enchanting
Winnie the Pooh.

Thursday, October 11, 2012

Today I am very tired, but this was only to be expected. Last night was
a late night but filled with adrenaline I kept going the entire evening. I
would like to thank Caroline and Mark for hosting the evening, which turned out
to be most successful, and I hope all those who made the effort to attend the Parkinson’s Support Group in Finchley enjoyed it, along with some members of the British Gaucher Association. It was lovely to meet
everyone and great to see some familiar faces that I have not seen for some
time. Having the luxury of being able to attend a support group is not to be
taken lightly, for where I live; there is no young Parkinson’s support group in
the vicinity. Meeting and speaking with others who are in the same boat is invaluable
and feeling not alone; belonging to some sort of extended
Parkinson’s family gives one a sense of belonging to a community, that although
one would rather not qualify for, nonetheless sustains us through the bumpy journey
of life, and having this support whether a sufferer or caregiver is vital. The time and work that Caroline and Mark have put in over the years is
evident, as this appears to be a very successful active Support Group, and I wish you continued
success and thank you for having me as your guest last night.

Wednesday, October 10, 2012

Tonight I will be giving a talk at the Parkinson’s Support Group
in Finchley - London, and members from the British Gaucher Association who are interested,
have been invited to join in for the evening. I intend resting all day, so that
I will have enough energy for tonight’s speaking engagement. I look forward to
seeing the organisers again, a charming vibrant couple who started this
particular Group some years ago, and have been doing an amazing job, and to also
meeting fellow sufferers. Who knows, maybe I’ll even come across another
patient like myself who has both Gaucher and Parkinson’s. It takes a great deal
of energy both physically and emotionally to speak in front of an audience when
chronically ill, but I will continue public speaking for as long as I can. Hearing
a patient talk to a group, from personal experience with Gaucher and Parkinson’s
disease, is totally different from listening to a doctor’s speech; a person
from a fundraising organisation, or simply reading about this topic. To see a
patient, and hear first-hand what it is like to live with Parkinson’s gives a
completely different perspective, one which fellow sufferer’s and caregivers
can relate to, and for those who are unfamiliar with the disease, valuable
information they might otherwise not have heard. The last time I gave a talk, I
was asked if I would like to sit down, but I remained standing, despite the pain
in my hips, for I have found delivering my message, holding the attention of
the audience and making eye to eye contact, is much easier to achieve when
standing. I see public speaking as an important way of raising awareness of
both diseases. If you are coming along tonight – I look forward to seeing you, I
know it will be an interesting evening.

Tuesday, October 9, 2012

I have sadly lost two brothers, but thankfully still have two others,
one of whom shares my fate in being born with Gaucher disease. I have often
heard of the term “sibling rivalry”, but being the baby of the family, I'm glad
to say I have no first-hand experience of this. I feel particularly close to my
brother with Gaucher, which I'm sure would come as no surprise to you, for we unfortunately have so much in common, understanding each other far more than anyone else could
possibly imagine. I treasure our
relationship, feeling close to each other, we are able to honestly discuss the most
intimate of issues and without much explanation or lengthy discussion, know
exactly what the other is trying to say and is experiencing. There have been
many occasions where we both suffer the same bone pains in the same place at
the same time; uncanny, unlikely? a little strange, but nonetheless true. I'm sure a doctor would have a hard time explaining this, but our close bond that invisibly
ties us together is inexplicable and goes beyond comprehension. Both of us have
the “happy gene” that I have spoken of, and although this gene does not really exist,
it is the best phrase that I can come up with to explain our strong fighting
spirit, dry British sense of humour and a determination to stay cheerful
despite our daily fight against chronic disease. If you think having Parkinson’s
is bad; try adding Gaucher disease into the equation, and see how you would
fare. I wouldn't wish this horrendous combination on anyone.

Monday, October 8, 2012

Sharing information is what it’s all about when suffering any chronic
disease. A marvellous lady Sherryl, who is a resource for those fighting
Parkinson’s, has much experience and good advice to offer, spoke about a book
that sounds like a “must” for any caregiver, and in the spirit of supporting
each other, I am wanted to tell you about this book I didn't know existed.

The Caregiver Help book is designed to provide caregivers the
tools to increase their self-care and their confidence to handle difficult
situations, emotions, and decisions. These tools will help caregivers to:
• Reduce personal stress
• Communicate effectively with family members, doctors, and paid help
• Practice self-care
• Reduce guilt, anger, and depression
• Experience relaxation techniques
• Make tough decisions
• Set goals and problem solve

Sunday, October 7, 2012

Here
is an excerpt from a poem entitled “ You've got to laugh” taken from my book “Parkinson’s,
shaken, not stirred”, which inspired Denis Shifrin, a professional artist and
cartoonist to draw a caricature of me counting sheep. Thank you so much Denis
for understanding and capturing the humour which gets me through tough times.
This caricature appeared in an article about me speaking at The First International Congress of
Narrative Medicine and Rare Diseases in Rome earlier this year and was featured
in the September edition of the ESRA Magazine.(Reprinted
with kind courtesy of ESRA MAGAZINEwww.esra-magazine.com)

Friday, October 5, 2012

Thanks to Parkinson's "gift" of
insomnia, over the last year I've had plenty of time to write in the middle of
the night, when the house is peaceful and quiet. The only sounds to be heard
are the humming of the ceiling fans, an occasional moan of the fridge
accompanied by our dog snoring at full pelt. This is the best time for me to
write; uninterrupted, I sit at the kitchen table while the rest of the
household are fast asleep. I have just finished writing another book entitled:"A Silver Lining" which is my story of growing up with Gaucher disease,
and battling Parkinson's, whilst remaining positive and living life to the
full. Although there is a serious undertone to the book, I have included many
humorous true stories which have happened to me over the years, making this book
light reading, hopefully bringing a smile to your face."A Silver
Lining"isavailable
through https://www.amazon.com/author/elainebentonor if you do not have a Kindle, you can download a free Kindle application which will enable you to read my book on a regular computer. My book is also available for other e-book readers through Smashwords I hope you enjoy reading my
story,and please feel free to
leave a review or comment; feedback is always welcome.

Thursday, October 4, 2012

They always say “it’s not what you say, but how you say it”. A well-meaning
lady spoke to me at a function recently, and leaning close, just inches
away from me, I could feel her breath on my face. She had obviously missed the lesson
on social etiquette and why it is considered rude to invade someone’s “personal
space”. But for now we’ll forgive her stepping over the boundaries of what is
socially acceptable. I sat pinned to my seat like a mouse caught in a corner
with a cat on the prowl – I had no escape route. Peering down at me, in a voice
one normally reserves for very young babies or admiring cute puppies, she asked
in a sickly sweet tone “do you remember me?” Staring back at her, I was
wondering how anyone in their right mind could possibly forget this woman. But
my good upbringing and polite British manners prevented me from saying this! I
wondered if she had the slightest idea of how condescending she sounded, and
how ridiculous her intonation was; which I found not only irritating but highly
demeaning. She continued to speak slowly and clearly as if giving directions to
a tourist who didn't speak a word of English, gesticulating wildly as if this
would help me understand. I sat dumbfounded, and thankfully she quickly ran out
of things to say, and having done her good deed of the day by talking to the poor
disabled person, she excused herself and trotted off, to no doubt invade
someone else’s personal space! Clearly this lady has never read any of my books
or heard me public speaking to a full auditorium. When will people understand,
that being chronically ill, doesn't mean you’ve lost your marbles?

Wednesday, October 3, 2012

I enjoy gardening, or rather I should say “pottering about”, for what I lack
in knowledge or skill, I make up for with great enthusiasm. I find it highly therapeutic
being out in the garden and can lose track of time quite quickly. My husband is
building me raised flower beds so that I can easily reach, whether standing or sitting
in a wheelchair. We not only measured the height, but also the depth so that each
flower bed is no deeper than the length of my arm. I get a great deal of
pleasure from being in the garden, and although I don’t have a particularly
green thumb, by sticking to plants and flowers of a hardy variety, they should
manage to survive my inexpert “care”! If you don’t have a garden, with a little
forethought and ingenuity you can turn a courtyard, balcony or even a window-sill
into a miniature garden, bringing the outdoors inside. I'm not saying gardening
is therapeutic for everyone, for some may see it as a tiresome chore they dislike intensely.
Just thinking of planning what I want to
plant and being taken to the nursery to purchase the plants will be a lovely
project I look forward to. And on the rainy cold days when I'm stuck inside the
house, I’ll still be able to look outside and admire my handiwork. A little
light gardening doesn't require great dexterity, and is something I can still
manage to do. As one’s abilities constantly change when suffering a
degenerative disease, finding things to occupy oneself, hobbies or even simple
chores become a very important part of one’s day.

Tuesday, October 2, 2012

When young and carefree, not in a million years would I have thought
that at the age of 44, Parkinson’s would be ruling my life. No longer in
control of this body, I had the audacity to think was mine, it is possessed by
a mischievous demon that shakes and tremors tormenting me night and day. If
this is an initiative or endurance test, then I wonder how I'm doing. How much
can the body and spirit continually endure? Due to unforeseen circumstances we
have been waiting over six years to move into a house that has been especially
designed with my disabilities in mind. Finally there is light at the end of the
tunnel and we are sitting amidst packing boxes, our apartment resembling a
warehouse. We are living in chaos at present, and I crave peaceful surroundings,
and to feel a sense of order and calm in the home. For too long chaos has
reigned, injecting its own form of stress, being housebound most of the time,
our present unsuitable conditions grate on my nerves, almost like hearing the
piercing screech of chalk on a blackboard. My nerves are raw, exposed and
sensitive; the waiting has been intolerable. However we are drawing close to
moving and life will be considerably easier and more comfortable for us in our
disabled friendly new home.

Monday, October 1, 2012

Parkinson’s can really put you to the test and becoming forgetful tries
the patience of all around you. It is highly frustrating not being able to do
what I once could, and the realization can suddenly bring out sharp words that
normally would not be uttered, which are not aimed at any particular
individual, but rather at the disease itself. Unfortunately anyone in the
firing line gets shot at even if not deserving. The entire scary metamorphosis
that a Parkinson’s patient goes through as the disease ravishesone’s brain and body is beyond imagination,
and terribly harsh for family and friends as they watch the person they once
loved slowly change before their very eyes. In contact with other fellow
sufferers, I know I am not alone when it comes to adjusting to new
circumstances. I realise that I can’t do what I used to, but somehow this doesn't always register, and I’m still under the impression that I can whip up
a three course meal in a flash, whereas in reality, it takes me all day just to
make one simple dish, or bake a solitary cake. It’s not a matter of being in
denial, but it’s just extremely hard to fully embrace and comprehend my lack of
ability in areas where I was once so competent.